In Search of an Answer
Alex’s parents struggled to find the right diagnosis and the right classroom for their “late bloomer.” After years of therapists, neurologists and anguish, they found a special-ed school that made all the difference.
It seemed like just another nugget of bad news in the paper. “Rocket fuel has been found in surprisingly high levels in mothers’ breast milk,” I read, sitting at my messy desk, sipping my second towering coffee of the morning. The next sentence jumped off the page: “These levels of rocket fuel could even cause developmental delays in children.”
I set the paper down next to my computer, the coffee turning sour in the back of my throat. Is that it? I asked myself. Did I eat food laced with rocket fuel when I was pregnant? Is that the reason why?
A Late Bloomer?
At his private elementary school, just six blocks from my office in New York City, my son, Alex, was at that moment heading into morning reading group. Six-and-a-half years old, he can read about 20 words and sound others out with his patented determination. His math skills are strong, too: He can add and is beginning to subtract. He loves science and computers and art. He lives for soccer.
And yet all is not as it should be. My son has “issues.” Developmental issues. He knew but five words at age two; he still doesn’t speak with proficiency. He has trouble relating to children his own age without prompting. At the playground on weekends, other little boys will scramble up to Alex, who is usually digging a tunnel in the sandbox, and eagerly ask, “Do you want to play?” Alex smiles, but he doesn’t reply or stop what he’s doing. A minute later, Alex will peer around and ask me, “Where’s the boy?” My heart breaking a bit, I’ll say, “He’s gone, Alex.” In the Darwinian stew of the playground, children have three seconds to respond to one another’s social cues. Alex misses by a mile.
When people ask me where my son goes to school, I tell them Alex attends a small special-ed school. Their next question is: “What’s wrong?” And then comes the confusing part: I don’t even know. Various “experts” — pediatric neurologists and psychologists, speech therapists, occupational therapists, and play therapists — have examined my son. And nearly every session with a doctor has led to a different diagnosis: He has attention deficit hyperactivity disorder (ADHD); he has Asperger’s; he has pervasive developmental disorder, not otherwise specified (PDD-NOS). He is an “out-of-sync” child, with sensory issues. He has low tone. He has a budding anxiety disorder. Some of these diagnoses cancel one another out.
One neurologist, who commanded $2,500 for an evaluation, admitted that PDD-NOS, Alex’s usual diagnosis, is a “garbage diagnosis.” “It means no one is certain what’s wrong with the child,” she said.
Alex’s warm and pragmatic pediatrician, Dr. Michael Traister, avoids labels in favor of stressing the positives: Alex is making steady progress. He talks more. He makes eye contact. Dr. Traister is one of the few cheerleaders in our lives.
A Disastrous Debut
My son’s debut in the world of education was an unmitigated disaster. “I’ve never seen a child like Alexander before,” hissed the director of his private preschool, when he was four years old. After one week, my husband and I were sitting in the director’s office with a consultant child psychologist, whose first question was: “Was Alexander premature?” (He was actually born four days past his due date.)
It went downhill from there. Seven weeks after Alex began preschool, the director informed me over the phone that a group of other parents had descended on her office and demanded that Alex be removed. He was taking up too much of the teacher’s time, time stolen from their children. I disintegrated into deep, painful sobs. Enraged, my husband stormed over to the preschool, ripped Alex’s name off his cubicle, and gathered all of his little belongings. We withdrew Alex from the school. You can’t fire us! We quit!
We hurled all of our savings at therapists in a desperate campaign to move Alex forward. None of the good ones in Manhattan – those with track records – would take my insurance. This was a cash-only enterprise. My then-employer sympathetically allowed me one day off a week for one month to shuttle my son around to the experts’ offices.
At the same time, my husband and I devoured Late Talking Children, by economist Thomas Sowell, himself the parent of a child with serious language delays. Sowell makes a persuasive case that many such children are actually gifted in math, science, and music (Einstein being the poster child). Labeling them developmentally delayed – and treating them as such – hurts rather than helps this type of child. “Alex is smart,” my husband and I told each other over and over. “He is a late bloomer.” We saw a cheerful, humorous boy with dark blond hair and blue eyes, who relished “Spot” books, James Taylor tunes, and perfectly prepared grilled-cheese sandwiches. The world saw a loser.
Although I worked full-time, I stayed involved in his therapies. The office of Alex’s speech therapist, who charged $1,200 a month for twice-a-week sessions, was a block from my office, and I sometimes attended the end of a session on my lunch hour. The therapist would sigh over Alex’s condition: “You’ve got to get him into a program this fall.” The way she said the word “program” signaled special-ed, and I wasn’t ready for that. Although Alex would be turning five over the summer, I wanted to get him into another preschool, give him one more year to catch up. When I was growing up, special-ed kids were subjected to unending torment. I didn’t want that for Alex.
Sometimes, as I walked back to my office from the therapist’s, it was hard to put one foot in front of another. I felt as if the world were pressing down on me.
Am I to Blame?
Along with my fear and worry and depression, I was still tormented by the word “why.” Were my genes lousy? Had I not eaten well enough while pregnant? Was it those three glasses of wine I drank before I even knew I was pregnant? If I had coached and prompted Alex more as a toddler, would he be so far behind? My husband had stayed home with our son his first three years, taking him to the park and playground every day, no matter the weather, to let our high-energy boy run it off. Would he have done better with nannies? Had we hopelessly bungled it?
“It’s neurological,” Alex’s play therapist assured me quietly one day when I wept over my unanswered questions. “It’s nothing you’ve done or haven’t done.” But it was hard to let myself off the hook.
One day I asked a fellow editor about her preteen daughter, who attended a special-ed school in Manhattan. I had to know whether she had hesitated to place her there. The answer was yes. When the girl was Alex’s age, my colleague and her husband had been confident she would grow out of it. She was a late bloomer, they thought. It took years of denial and academic struggle before they considered a special school.
After some teary talks, my husband and I followed up on a pamphlet for a new school for kids with learning delays. The director of the school greeted us heartily at the front door for our parents’ tour. Alex was accepted a month or so later. Our son is now in the middle of his second year, and we have no reason to believe he won’t mainstream after third grade.
I still wake up in the middle of the night and ask why. I can’t seem to make peace with the fact that there are no clear answers to this. Maybe it’s the journalist in me. I crave the tidy explanation. But while I wrestle with it, we all move forward. And hope.
Updated on January 12, 2018